Saturday, May 4, 2013

Everything we Need to Know about Brain Tumors We Somehow Missed in Kindergarten

For the month of May, in honor of brain tumor and NF awareness month (so convenient to have them at the same time!), I am trying to tell our family's story of living through both.  I hope that by the end folks have a sense what brain tumors and NF can do to a family, why and how we can work for better treatments (and maybe a cure!), and why we should always, always hope.

May 4

Kindergarten was a challenge for Genna. She LOVED going. She loved her uniform, seeing her teacher, coloring pictures, but the academic part was challenging. Genna was impulsive, speedy, emotional, she struggled with fine motor skills in a way that her brother had not. Don’t get me wrong, her brother’s first week of kindergarten was marked by a call from his teacher telling me that “he was quite an entertainer”, which is teacher code for “your child is constantly talking, joking, falling out of his desk, making vulgar noises, and generally distracting everyone around him as much as possible” . But my son loved letters and numbers and had no problem with schoolwork when he wasn’t trying to be a 5 year old Rodney Dangerfield.

Genna struggled with letters and numbers and just kind of a lot of things, enough that her teacher and I agreed I should talk to someone. Our local school district would have nothing to do with us since Genna goes to Catholic school, so we went back to the neurologist who sent us for that first MRI. After hours of expensive testing and a ridiculous waiting room wait (a tiny room full of wailing children), the doc said maybe we should have her tested.

You can read it twice, it still makes no sense. I thought that’s what he was DOING, testing her…

I was young, and kind of uh, ok? and frustrated and unsure of what to do, and I didn’t push the issue, except to run around in circles with our school district some more. Something just wasn’t quite right. . .

Easter, 2004 . I went and dug out pictures, and hey, I used to scrapbook things.
 I wish I still did that, I love how these pages look.
G's face is a little pale, now I see that her coloring just wasn't quite right, but then...yeah. I saw nothing

Genna was frequently tired, she had zero energy for her new dance class, I figured she just didn’t like Irish step dancing as much as twirling in a tutu. She was kind of ferocious diva a lot of the time, but I figured that was just a phase she was going through. The doctor had given us no answers, so we just kept slogging on.

At the very end of her kindergarten year, Genna’s teacher got sick. Mrs. C had all sorts of doctor’s appointments, and near the end of May 2004 we found out, to our unspeakable horror, that she had a malignant brain tumor.

You know, 9 years later this is still really hard to talk about.

Genna didn’t really understand, she just knew Mrs. C was sick, and we tried to stay hopeful, but we knew the stats were grim.

We finished out the school year without Mrs. C, and jumped into summer. G’s annual pediatric check was set, as was my son’s (two summer birthdays means we always do all those appointments in the summer), her eye check was set up for August 3, after our annual trip to Lake George.

I remember nothing else about that summer.I have pictures somewhere. But I remember nothing else.

After August 30, everything else disappeared.

Apparently we went on a steam train ride. Look at how pale G is. How did we not know?
Old pictures bring up hard questions.

tomorrow: D-day, aka The First Worst Day Ever

1 comment:

  1. Thanks for sharing your story. You have a way with words, for sure. I know it cannot be easy to write out your family's story, but I think it is so important.